Looking back at blog posts I have been working on #openAPS in one capacity or another for the last two years. Just double checked it, I placed my first Adafruit order for xDrip and OpenAPS parts on May 11, 2015… that puts us at over two years. What has held me up this long? Well there was a lot of life stuff for sure… moving to DC, living at home, being seriously sick with diabetes fall out, moving to Seattle, changing careers, 6 month intensive software development program, new job, freelancing, another new job, god knows how much emotional turmoil, therapists, new anxiety drugs, my grandmother passing away, one of our family dogs passing away, gender feels, relationship feels… it’s been a jam packed two years, but I can’t help but think how different it could have been if I had had balanced BG numbers through that time… but I just wasn’t ready. Honestly I’m barely ready now, I was not prepared for the emotional turmoil accompanying starting openAPS – it’s like I don’t feel like I deserve these numbers, I’m waiting for the other foot to drop, for it to be taken away, for it not to work, to go back to struggling… that maybe this would ever not be a limit, or a worry or whatever… it’s like just being in constant shock. I’m just sort of floating. I have so many things that I should be doing right now, but instead I’m just here, existing, watching the terminal with my openAPS logs and my nightscout dashboard in disbelief. I was not expecting all these feelings. I’m glad it’s a busy weekend with lots of friends, I’m not sure how I would be dealing otherwise. Catching the lows has eliminated the rebounds and kept me so much more in range I can’t even believe it. disbelief… that pretty much covers it.
It is very different being a diabetic v. caring for a diabetic. Actually, I guess I’m not really qualified to say that, as I can only speak as a diabetic, but what I can tell you is that it irritates the hell out of me when I read stuff written by parents that waxes on about how hard it is to deal with their kid’s diabetes. fuck you. I’m not a parent. I know there are things that I don’t understand about that relationship, responsibility, position, but I can tell you that as a diabetic, i.e. the one who will actually die if I fuck something up, I have a really hard time feeling sympathy for an onlooker. I know that is harsh. I know that there are people in my life who have worried about me, had to watch me go through things that suck, watch me behave in ways that might not necessarily be the “best for me,” wonder if I’m going to be okay — and if I wasn’t open to hearing their opinion, stand on the sideline and wait for me to figure it out myself, or die trying. I realize that all of this might sound a tad dramatic, but that’s how I feel right now. The other part of this, which it’s taken me longer to get to, is that if I’m honest, I’m jealous of diabetics that were diagnosed when they still had a support system at home. I feel so alone sometimes. Even though I know that I had quite enough arguments with my parents growing up without another thing to fight over, let alone one with such gravity, but I can’t help but think, then I wouldn’t be alone. although… then I don’t have to take direction from anyone either… scratch parents, thank god I wasn’t married, that sounds worse than being diagnosed as a kid — at least resenting your parents is part of the deal, I can’t imagine going through that with a partner. Even the small taste of that I had was horrible — having to worry about another person’s reaction to what you’re already dealing with is a pain in the ass, it’s hard enough for me to deal with me. but then I guess that’s the catch, maybe I am better off on my own — is it possible to care for a diabetic without meddling in their diabetic life/choices/status? if you care, then you want to know, but then where does that leave the diabetic? I don’t need or want to have to report my “status,” even when asked in passing, especially by my parents, I find it super irritating (I know this reaction is not rational or polite). I know that people want to care, or that they do care, but rather than care, I wish they would just try to understand rather than try to help. Unless you can magically fix my pancreas you can’t help me… honestly, even my endocrinologist can’t really help me, all this shit is just a massive guessing game, so could you just be there? Just stay still, and love me. that’s all I need, and that’s all I ask.
I was having trouble concentrating today, after hours of fighting to stay concentrated, then falling into tv, fading into over thinking, and then all of a sudden I knew I was on an edge, not a relapse edge, but an edge all the same — I text a sober friend, and another friend, and my sponsor… anyway, the result of all this reaching out for help (the thought of which still makes me cringe) was a conversation with my sponsor which made me feel a lot better — she said to me that in speaking with her that I had “dropped the rock.” I’m not sure if this is what she meant by that, but what came to mind for me was running underwater and needing to drop the rock in order to surface for air… this was by far the coolest picture I was able to find of this… I see myself as the swimmer on the left. This is where I stop trying to separate parts of my life — I am emotionally upset, I still check my blood sugar, I don’t assume it’s one thing or the other, I just have to treat the whole Sophie, as a whole, in whatever manner is required at that moment. And at this moment while I need to change my pod, and do a bunch of other things I’m sure… all I can think about is how violated I felt when my doctor took my PDM away and made changes to it without explaining or including me in the decisions. I accept that my reaction to this is my own, but it does not make it any less valid. It’s been over a week and I can still feel that empty exposed feeling of sitting in that doctor’s office being told off, and then they didn’t even know how to make the changes properly and had to then hand my PDM off to yet another person to adjust/correct/fix whatever it was they were doing. I don’t even remember what she was saying or what they did. All I know is that it doesn’t seem to have done much, the best thing that has happened for my diabetes since then has been going back to crossfit — while a bit scary, it seemed to have a great effect on my numbers for the rest of the day — I will need to remember to eat more, but my post-workout numbers were encouraging. Ending on a high note… planning on working out again tomorrow… TBD